Autoimmune Hepatitis

[mamajenny2]

Our 6 yr old daughter was diagnosed 2 1/2 yrs ago with type 2 Autoimmune Hepatitis. She recently had her first relapse and we are working on getting her levels back down to normal (almost there:)

I am curious if anyone has this or has any experience with it. ThanksJenny

[tacatcon]

I have never heard of this. I am just bumping this up for you so maybe some other members can help you out. How did you learn she had this?

[wealthybarney]

Bumping.
Are they treating this with Interferon?
Are they waiting until she gets older for a partial liver transplant?

[Mothernature]

Originally Posted by tacatcon I have never heard of this. I am just bumping this up for you so maybe some other members can help you out. How did you learn she had this?

Any condition that has the term "autoimmune" means the immune system of the person is attacking that particular organ or part of the body. The immune system mistakes as something foreign.

This is found through urine creatine (blood creatine is usually for GFR or kidney health), ALT, and AST blood tests initially. An AST can be influenced by other inflammation in the body such as a heart attack or strained muscle. A doctor can order further blood tests specifically for the liver.

The particular organ involved is able to regenerate and heal itself. It won't stop the attack though.

[mamajenny2]

Thank you for your responses- When she was 4 I picked Abby up from daycare and the director pulled me aside before going to her room to let me know her eyes were yellow. We were in the Peds CCU for two wks with more testing than I'd care to remember- Her GI said the only thing left was a biopsy. Good thing because that night her liver enzymes were over 2600-2800 (normal being under 32) and the Dr. ended up starting her on Prednisone before the bx results were back. She was positive for anti-lkm-Type 2 Autoimmune Hepatitis.


She was taking daily steroids to keep her immune system from going into overdrive and 'killing her liver' this had worked until recently and she had her first relapse. Azathiaprine was added to the steroid and when her enzymes dropped to almost normal she was weaned from the steroid and is taking azathiaprine- hopefully this will keep working- I just don't know what to expect now. A transplant is a possibility-god willing, never- but that won't take care of the problem.

I have never met or found onyone with this and was hoping maybe someone had some experience with it.Thanks so much for reading -any advice would be appreciated.
Jenny

[wealthybarney]

Now i have healthcare experience, some with Autoimmune Diseases, but this specifically, I would say no.

What concerns me though, is she seeing BOTH a GI MD plus a Rhematologist who regularly treats autoimmune diseases?
The reason I ask, is that a Rhematolgist is up on the most recent immune suppressors where a GI MD may not be.

Since she must be on drugs for the rest of her life for this, for my child, I would want the LEAST toxic immune suppressant drugs.
So very, very glad she is off daily prednisone/steroids, used only for flares, so her little growing bones won't get brittle.

May I ask, did they do an ANA Thyroid Blood Test(AntiNuclearAntibody=ANA), to see if she also had antibodies to her Thyroid? If not, please file this, and check this when she goes thru puberty and starts her cycle.

May I ask if she had a Blood Tox Screen as well to determine if she received any poisons in daycare?
Many autoimmune diseases come from outside toxins getting in, and the immune hyperdrive is a RESULT causing the disease, not the original event. The rest, of course, they just don't know.

Another option for you and in getting more answers is a Teaching Hospital, and their Rheumatology Dept/Clinic.. Those places get Grants for research, and have the lastest medical info-HTH.